I have just been officially diagnosed this week with triple negative BC. I’m early 40s, no family history and to say I’ve been knocked is an understatement. I am struggling more with the fact that there seems to be one route at the moment, and that is straight to surgery in a few weeks time. My consultant said in normal circumstances, I would have had chemo, then maybe a lumpectomy, possibly a mastectomy… Also they are unable to reconstruct due to restrictions of operating procedures allowed at the moment.
But I can see others are receiving Chemo - so it can’t be nationwide. I feel its so drastic straightaway and I have no options.
Is there anyone else in the same boat?
Would love some advice on what is going to happen over the next few weeks, after surgery and essentials that I need to get me through the first bit.
Hi mumbear, Welcome to the forum but sorry you find Yourself here, especially during COVID19. Standard protocols seem to be varied at present and it may also be worth dropping a note to the nurses on here to see if they know nationally whether your treatment would have been different, had you lived elsewhere. Do you know the tumour size and staging yet? If it’s a smaller tumour then a lumpectomy is more likely. Triple negative more likely has chemo and or radiotherapy with surgery. Do you know whether you would have had chemo under different circumstances? You could always ring your Breast unit nurse or oncologists secretary to clarify. When we attend appointments around diagnosis its very difficult to remember everything so it’s expected that you’d need support with understanding everything.
For surgery you’ll need a front fastening sports bra, front fastening pyjamas, a tote bag for your drain bottles, lip balm (anaesthetic dries your lips out), a small cushion to protect you from the seatbelt on the journey home. Best wishes and come back and let us know how it’s going. X
It was only when I joined this forum that I was even aware that having chemo first was an option. I was directed straight to a partial mastectomy, then a full mastectomy and full axillary clearance (as I was heavily node positive) and then told i) I was free of the cancer but ii) chemotherapy would be essential. NICE directs that this should commence within 90 days of surgery for best efficacy but making anyone immune-compromised right now is risky so oncologists might go for the ‘control’ treatment of hormone therapy until the crisis is past? The surgery generally removes the cancer - hence the talk of margins - and the treatments are to improve our chances of it not recurring. The fact is, the mastectomy will probably save your life and your team will have weighed up all the options as they know only too well how traumatic a mastectomy can be. I can’t imagine a worse time to get this diagnosis
I do hope it goes well for you. I found there was a lot of discomfort but not to the point of needing pain relief - but stock up on pain relief in case. You may have a drain attached which is a bloody nuisance unless you have a sensible hospital that provides a means for carrying it about. Otherwise, you’ll have to design your own papoose with a scarf! Front opening clothes are essential, the looser the better (I nicked a couple of my husband’s old shirts and wore joggers) and you’ll need to sleep on your back with your arm on a pillow, partly to stop you rolling onto the wound in your sleep, partly for comfort (I guess it depends if your armpit is involved).
This may sound scary but it’s best to be aware that there may be nerve damage, With a mastectomy, you may experience ‘phantom nipple’ which is a kind of mild nipply sensation you can’t scratch but it goes away if you ignore it! You may experience strange sensations down your arm too. You’ll be given exercises to do to keep movement in your shoulder and, eventually, keep your breast muscle and scar supple - essential, especially if you plan on having a reconstruction. The information on this site about pain is helpful.
Bras depend on the size of your boobs. I was small-breasted so I felt most comfortable in tight-fitting sports bras (Under Armour). Some people like the ‘comfort’ bras you can buy from George, M&S etc (not quite sports bras and some have some gentle shaping that may make you feel a bit better about yourself). Your own bras probably won’t work because, without the weight of two boobs, they tend to rotate to one side. You may be lucky but you’re advised to remove wiring. A bra with a band underneath works best. The hospital should give you a softie (which is a rubbish fit) but you’ll maybe have to wait for a prosthesis as they need fitting. Meantime, go to www.knittedknockersuk.org for free knitted shapes that are more to a specific size and a lot more comfortable than a softie. They are brilliant.
Apart from that, you need a personal maid to wait on you hand and foot, someone to do ALL domestic chores, including cooking etc and a lot of tlc. And water! The emotional aspect of all this shouldn’t be underrated - a cancer diagnosis and the loss of a breast is double whammy and your emotions may be all over the place. That is NORMAL. Just remember to weigh up anger about losing a breast with the fact that you are a lot safer without it. Trust your team (not always easy but worth it).
I too have had a new diagnosis I last Thursday of invasive ductile breast grade 2 and my options are also limited. How can we make an informed decision about what treatment we want, a decision that affects us for the rest of our lives when all of the options aren’t straight forward anymore, so many ifs and buts and sorry you can’t have that?!?
I am having a meeting with the consultant on Thursday, gonna see if I can get some more info before they bung me in for surgery on Monday
